When Chronic Illness Makes You World Weary: A Guest Post

In August of 2009, Theresa Johnson was diagnosed with Systemic Lupus Erythematosus, Sjögren's Syndrome, and Rheumatoid Arthritis. After reading one of her recent blog posts, I asked her if she’d turn it into a guest piece for us. I’m grateful that she agreed to it. I hope you find this as validating of your experience and as inspiring as I do. Toni

This may be the worst possible time for me to try and write about chronic illness. I'm feeling worse than usual. I'm tired and I am completely overwhelmed by everything "disability.” Where do I even begin is an understatement. First, let me be honest. This is not going to be one of my more typical positive pieces. At least not at the beginning. Knowing my nature, I'll find something good in all of this by the end, if you can make it that far. You may just want to bail out now.

A lot has happened—a lot continues to happen—in my world. The majority of what goes on is good. I have so much to be thankful for—an incredibly loving husband who does more for me every day than I could write about in a week. A slew of daughters who bring me so much joy and continually make me proud. A beautiful home, good health care... a bounty of blessings indeed.

But then there is this illness. This chronic, relentless, imposing, hungry disease that makes Kubler-Ross's Five Stages of Grief a condiment to my daily issue du jour. It's never ending. And now, it's become so difficult for me to actually write. Cognitive function is on the decline. Coming up with words, making sense, tying things together...all those things that for a lifetime have come so easily, now take so much work.

Not only does it take work, it takes time. It takes time to read something over and over and over again before it makes sense. Even if they are my own words. And then there is the physical side of actually sitting at the computer. My eyes are failing and doing so in such an odd fashion that the minute I get glasses, they don't work. I spent over a thousand dollars on glasses back in May only to send them back. No more of that business. It's easier to just muster through. Another unsolvable mystery.

Then there is pain. Some of it constant, some of it coming and going on a whim. I never know when, where, why. Believe me, I have spent so much time trying to figure out what causes pain—joint pain, nerve pain, GI pain, head pain... I'm giving up. Which I think, at this stage of the game is good. Not giving up, but giving up. Just giving up trying to figure everything out. Eventually doctors are happy to hear this. I know, it sounds bad, but it isn't. When I first got sick, finding out the WHY was very important. But five years and numerous diagnoses later, it's more "take it as you get it.” You learn to look out for the more serious signs and get used to putting up with the fleeting, even if it knocks you down for a few days. So, that's that. That's why writing has been "slim pickins'" as my mother would say.

Toni Bernhard of How to Be Sick and How to Wake Up has had some really spot on posts lately on her blog “Turning Straw Into Gold” in Psychology Today. In fact, I think that's what got my creative/frustrated juices flowing. Her post, “What It's Like to Take a Vacation While Chronically Ill,” especially hit home. She gives four really good examples of why going on a simple (extremely simple) vacation can cause a tremendous amount of stress both physically and mentally. All good.

But her number one point really resonated with me in an area I feel particularly tender towards right now. She stated, "Except for my immediate family and my two closest friends, I didn't tell people I was going." She then goes on to ask, "Why would I deliberately hide a trip from people?" and answers her own question with responses that both comfort me and infuriate me. Comfort because I cannot tell you how good it feels to know that what I am going through is experienced by other people. Infuriate because of the continual isolation that being chronically ill creates. Isolation due to not being able to function at a level that keeps me involved with others, as well as isolation that is created by being judged by others. The latter is what's got my dander up.

Let me be clear. Either I am oblivious to it or I truly don't experience it, but I have been extremely fortunate to have family and friends who have not judged me in this regard. My immediate family knows....knows how sick I am. They have been with me every step of the way and know the serious and unpredictable nature of this disease. They have seen it first hand. Thankfully, due to a lot of very good medication and a superb medical team, I have not had a hospital stay in over two years. But there have been some doozies in the past and we will never forget.

Theresa's disability forms from the last five years

What weighs on me is this. As thankful as I am for the disability checks that pay the bills in our home, I cannot tell you how heavy the burden is to be labeled as "disabled" nor can I put into words the judgment that comes along with that label. In particular, the judgment that comes with trying to prove that disability. There is an odd contradiction that goes on within me when it comes to justifying my illness with entities such as social security or long-term disability insurance, both of which impart their own level of scrutiny. I would wish for nothing more than to be well. I would do almost anything to return to the job that I loved and the people that made it so. To have to work so hard to prove the very thing that torments me, is at times almost unbearable. And if it were not for our financial situation, I would gladly give it up—every penny, in a heartbeat.

This illness is, by and large, the most horrible thing that has ever happened to me. It has changed my life forever. Every single moment of my life is infused with it. Not one second is spared. What I eat, when I eat, what I wear, what I read, how I sit, how I lay, where I go, when I go, when I wake, when I sleep, how I sleep, what plans are made, who I talk to, what I think...nothing goes without consideration of my illness. To stand in judgment of it as if it were not so—well, on days like this it's more than I can bear.

So when Toni Bernhard talks about not wanting to tell people that she is going on vacation, well...I get it. I get it because I have been there myself. There is something terribly wrong when people with well-documented medical illnesses are in fear of being seen out in public when they are having a good day. Or when they're not having a good day, but are just managing to look well for the sake of those they love. And maybe what's wrong is with me. Like Toni said in her article, "Perhaps I let the scales tip in the wrong direction on this one." But to be honest, some days I just don't have what it takes to do the work. To let it go. To be "okay" with it all. Some days, like this day, I'm just weary of it.

Where is the good?

What could possibly be good out of all of this? Believe me, on days like today, weeks like this week, it does not come naturally to answer that question. It takes work. It takes work to not spiral downward. My world is very small sometimes. These four walls get tighter and tighter and problems can look really enormous at times. And they are...

But the amount of space I allow them to take is up to me. There are things that I have learned while carrying on with this ridiculous illness that have become part of my toolkit that do nothing short of saving my life. And maybe they will help you. So here goes. Here's the good...and then some.

1. Be patient...with yourself. Don't panic. These things come and go, come and go, come and go. If you look back over the course of your life, just LOOK at how many times you have been in what feels like "life or death" situations. I feel as if I could come up with a million, yet honestly, I have only ever been in one. And it truly was life or death. And you know what, NONE OF THIS MATTERED. So let yourself be angry, happy, sad, miserable. Feel it, experience it...and then let it go. Good solutions come out of clear, unemotional thinking. Give yourself time for both.

2. Be patient...with your world. The enormous energy behind this whole piece is with my frustration at being judged. Yet, as I sit here and spin my tales of "evil and wrongdoing" I am, in essence, judging. And maybe justifiably so...but maybe not. There is a lot of unknown out there and my over-emotional, fried, chronically suffering mind is probably the last to know the true story. So, try giving your world the benefit of the doubt whenever possible. Our fear is that we'll be taken advantage of. Our reality is often quite different. Might as well wait for the facts. Then we'll really have someone to yell at. Just kidding. Kind of.

3. Grow. Whatever it is that brings you to this point. Whatever it is that has made you weary. In the end—or maybe even in the middle of it all—learn something. I don't know what it is for you, but for me, it always comes down to compassion. Compassion for myself and compassion for my world. In all the shit that happens out there—to us, to those we love, to those we don't know personally but still find ourselves heartbroken over their suffering—if we take from all of it the capacity to hold compassion in our hearts, then we understand the way to end suffering. Both for ourselves and for those around us. If I understand what it means to have compassion for myself and for those who hurt me, then I can no longer hold both love and hate in my heart. And if I have love, then I have peace. And if I have peace...

Then I have good.

Thanks for making it to the end. I needed you here.

Theresa is a wife, a mother of five daughters and two stepdaughters, an artist, and a writer. She worked for years as a business analyst for the State of Minnesota Department of Human Services and enjoyed many years as a runner, entering competitions with her husband and daughters. In October of 2008, after running the Twin Cities Marathon, she came down with an unexpected illness. Her health continued to decline and by February of 2009, she began a series of hospitalizations. By early fall of that year, she was diagnosis with Systemic Lupus Erythematosus, Sjögren's Syndrome, and Rheumatoid Arthritis.

We could all do better to "let go" a little bit more each day! I like how you say, "and not drive myself so crazy"! That just makes me smile. Funny how much trouble we can cause ourselves! It's good to keep things in perspective, isn't it? Wishing you the best, Gerri.

the stack of folders containing your disability process is in stark contrast to my own, which contains 5 papers, the most recent being my approval. although my approval for ssdi was granted in 8 weeks, there is no joy to be found there either...really what it felt like was a cold,hard, very stinging slap. the end.
further, i would love to take vacation, however now my husband gets no time off from work (due to necessary fmla for me) & so we cannot afford to "get away".
i guess my point is all of this...the way you feel about yourself or the judgement of others...comes down to individual perspective.

The way you feel may come down to "individual perspective." But individual perspective is based on individual experience. From my 10 years of chronic illness, some spent on disability till I turned 66, and from reading pain and illness forums, it would be a rare disability case that would be decided with 5 pieces of paper. You must have done yours online or through a lawyer. You may not find joy in that, but I would expect at least a little gratitude. Since disability doesn't cover your entire salary, I would think there would be some happiness in covering some of it. It costs to be sick!

I hope your husband can work out a few days of leave for a vacation sometime. It sounds like he must really work for a Scrooge. Get him to ask at Christmas some year when all men's hearts are filled with good will. Maybe someone else has a better idea?

Yes, Annette, if I understand you correctly, I think we are in agreement. The way I feel about myself and the way in which I allow others to make me feel is up to me, and me alone. Some days, that truth works wonderfully for me and I am able to find that place of "okay-ness". Other days, the work is just too much and I fall prey to the affects of my circumstances. I don't think that the intention is to be completely unaffected by the things that are painful to us. Life is just painful sometimes. But I do believe that it is up to us what we do with it. Which will greatly determine how long we suffer! Thank you so much for your point!

Theresa, we share the same issues, pretty much. I have SLE
Nephritis..Lupus is in both kidneys. Sogrens and Mixed Connrxtive Tissue disease..I have spent years in bed or just sitting because of the pain. My son in law is a Dr and two daughters are RN's. They have tried all kinds of things on me and have done major research. Finally, last November, they found a miracle. I didn't really believe it would work, but I'm living proof that it has. Please try this for six months. You won't believe the results. Food sensitivity is the key. Makes your immune system attack you because you are eating something you are sensitive to. Yes, it's that simple.

It's eating by eliminating soy, sugar, gluten, dairy, peanuts, wheat from your diet. Buy JJ VIRGINS three books, about $20 each. The sugar, is causing severe inflammation in your body. Cut these foods out for three or four weeks, then reintroduce one at a time for three weeks to see if you are sensitive. I did this, 80% of my pain left, my energy soared and I felt ALIVE! Keep a daily food diary to show how you are feeling each new day. If you feel bad one day, look at your diary to see what you ate.

I am sensitive to eggs, sugar and wheat, so far. I have so much energy I can't be still. No more naps. Now, if overdo cleaning, etc, I do notice discomfort. Also, get JJ's Probotic to heal your leaky gut, because that's part of the healing. Research Leaky Gut Syndrome on the net to learn about it and the cause. It's part of your problem. I rarely need a pain tablet, where before, I was up to 3 daily and still was in pain.

I do hope you try this for yourself. I started November 2nd and noticed a big difference within two weeks or less. God has given us something to heal us. Take advantage of it. You won't be sorry. Blessings

Theresa your wonderful insightful piece kept me glued to the screen, and saying, "Oh,that's so true."
I have had RA and various affiliated bedevilments for much too long. I truly hope you can continue to write and put into words what it's like to live with chronic illness.

You are truly welcome Chris. I am just so pleased to think that my words echoed your life. Not that I hope for suffering for you, but that I know how comforting it is to have that happen. It feels good to be heard, and sometimes we don't have the breath to do it ourselves. I wish you the best Chris.

Theresa,
Your post is not only spot-on for the chronically ill but for anyone who is alive right now. "The world is too much with us late and soon" Wordsworth wrote in the 19th century; similarly, you quoted John Muir (in another of your posts) as writing that people were realizing the mountains are where home is--wandering the wilderness. My point is we return home when we are weary of chasing life.

Chronically ill myself--lupus, Sjogren's mainly--that journey is more and more one within rather than in the outside world. I am so fortunate in that solitude has always favored me while the social scene has not. Yet, I miss my walks but I am grateful for those days I am able to drive to the park just to be.

I have been quite world weary of late but your post (like many of Toni's) reminded me of the freshness, of the possibility in each moment, in each breath. Thank you.

Thank you Karen. I'm so sorry for your "world-weariness" as well. It's good to hear you say, "we return home when we are weary of chasing life". I know that can mean something differently for each person, but I feel as if the result is somewhat the same thing. For me, this is the earth. For others, it may be completely within themselves. In any case, I feel that it is a place of rest. And in rest, there is the chance to breathe lighter, to think clearer and to look upon the world with a renewed sense of the moment - full of both quiet reflection and potential. Thank you so much for you comments and I wish you well on your journey.

Hi,
Your expression is lovely. I am just these past 3 months going through a slowdown, with a couple eyebrow raising diagnosis that I'm just getting used to identifying with. Yet I resist accepting those labels. But I'm 68, and our bodies do wear out, and the world is full of unhealthy elements. I love that you appreciate just driving to the park and enjoying Being. I think illness or handicapping developments are interesting and potent teachers of what really matters, or doesn't matter I think is the phrase for me. This is a rich topic isn't it?

Yes, a rich topic indeed! I have often said that if I was given the option to be healed, but would have to give up all that I have learned and how I have changed, I would stay sick. I truly would. There have been a couple of times in the life of my illness where I was unsure if I would make it through. One was during a very bad episode of pancreatitis and the other was after a heart surgery. When one comes through these things, it's with an entirely different perspective. What matters and what does not matter becomes very clear. For this, I am truly thankful.
Thank you for sharing such words of truth. They are so good to be reminded of.

Ten years ago when I got ssdi and long-term disability from my job (city librarian), a company called Alsup called me and offered their services. I would narrate my story and they would fill out the paperwork and take care of everything. It all sounded fishy to me so I turned them down. I thought I would just trust myself to do it. They called back several times and long story short, I said yes. All was free. They got disability for me without my having to fill out any more paperwork or go to court or do whatever. I can't even tell you exactly how or why I got it. Nationwide, my long term, called me at one point and said they were now taking me off it. I had had enough time to get well. I asked who to write to dispute this. They gave me an address, I wrote a blistering letter, and some very nice person called me and said they were putting me back on. That was really all the hard work I did. Anyway, Alsup did ask me if I knew anyone else trying to get disability. Of course, I didn't, so that was that.

My company paid Alsup; I don't know if they help people on an individual basis. But I'm throwing their name out there for whatever it's worth. I did work with my pain for a number of years. It was very hard. My guardian angel whispered "disability" in my ear one day, I swear, and instead of retiring I tried for it. Disability was such a "dirty word" that I had never thought I would ever use it even though it was one of my benefits. Alsup helped it be easy. It should be that easy for anyone and I wish it was. P.S. This is in no way an advertisement for Alsup, just my individual story.

Thank you so much for your story and the information! (and thanks for the disclaimer!) I know there are a lot of good folks out there that work not only with disability companies but for them, and so your point is a very good one to make. In fact, I recently got an email from a women (after reading the post) that did so for years and she just wanted to make sure that in all that has been happening, I keep that in mind. I was and AM so grateful for this reminder. I think it would do us all good to take "dirty words" out of our vocabulary. In reality, they are just words, but what we make of them can determine both our own suffering and the suffering of others. I wish you the best of luck and thank you so much for sharing Nina.

This was a really good read! I found myself in each paragraph I read. I too suffer with the thought of being judged and even judging myself in regards to my illness. I have the papers to fill in and for my neurologist to fill in to apply for the disability pension but it is all just sitting in my bedroom waiting, waiting, waiting for me to take the plunge. I fear judgement from my neurologist, from social security, from the psychologist they will have me see and from myself...am I really as bad as I feel, there are people worse off than me and am I ready to be labelled as disabled. I too have always loved to write but now words are hard to spell (thanks to computers it not so much of a problem with spellcheck) I can't easily recall which word to even use. Names are out of my reach too often these days.
Thank you Theresa, for posting this blog.

Christine, thank you for your kind words. I am so, so sorry that you are struggling with filling out your papers. There is just so much wrong with that picture I don't even know where to begin. And it has nothing to do with YOU! But only you can decide what you are capable of doing both physically and mentally, and in the end, know what's best for you during this time. My only suggestion would be to reach out to others for help if you can. This is not a struggle you should be going through alone. I am a terrible one when it comes to asking for help - but I'm getting better. And I'm getting better at it because I am finding that all the things I am afraid of (by asking for help) very rarely ever come to fruition. Beyond that, make the best possible decisions you can based on what's best for you. Your doctors are there to help you in any way they can. And yes, THANK GOODNESS for spell check. Now if they could just come up with a program that lets you know if you are making sense or not!
Thank you so much for reading and warmest wishes to you.

Bless you Theresa, for enumerating what many of us deal with on a daily basis. World weary says it so well. I'm approaching my 20th year of debilitating chronic illness, and as an anniversary gift, I've been thrown into the worst relapse tailspin I've experienced in over a decade. So yes, I sure am world weary, sick and tired of being sick and tired. I especially related to your words about the walls shrinking in, gosh it's such a soul numbing feeling. My way of coping is to force my mind to recall joyful moments in those last 20 years, and getting through today, always with the hope of a better tomorrow. And faith, which always sustains me. Thank you also to Toni, and to all those who reach out to those of us who sometimes cannot even reach back.

Kathy, I am so sorry to hear you are relapsing. I know that as each year passes, these relapses can get more difficult if for nothing more than the fact that we have less to draw from psychologically. It's so very hard to not get weary. Winters are very long where I live and I get especially down. There are days when I feel like my world could fit in the end of a thimble. It's hard not to become hopeless - it takes work. Spirituality and faith are great rocks to keep us from that edge. I am so glad to hear that your faith sustains you. And I wish for better days very soon. Best wishes to you, my friend. Be good gentle with yourself.

Thank you Theresa. Your writing resonated with me. I have a disabling chronic illness and then have family tragedy heaped upon that and feel so weary!
You are probably sick of people suggesting things and trying to "fix" the situation for you, but I feel I would be amiss if I did not suggest something. Have you considered Lyme disease? I was diagnosed with ME/CFS and Fibromyalgia in 2008 and diagnosed with Lyme disease in 2013, as was my daughter, although we cannot either recall a tick bite. Now we have something to treat and to potentially reverse my continuing deterioration. Lyme disease can mimic Lupus and can cause auto immune conditions like rheumatoid arthritis. Anyway, you may have already ticked Lyme off your list.
Wishing you all the very best, may you find contentment in whatever circumstance you find yourself.

Anne, thank you so much for your comment. You know, nothing brings more joy to my heart than to hear words like "resonated with me" or "this could be my story" or "thank you for writing what I feel". Obviously my greatest hope would be that none of us suffer from these illnesses, but if we do, how wonderfully comforting to know we are not alone in doing so. I have had others very critical of this kind of sharing, accusing the chronically ill of "feeding off each other" like we are somehow propagating our own illnesses and the suffering of others. This is so very far from the truth! I remember when my kids would fall down and hurt themselves when they were young. If I was busy talking to someone or doing something the crying and whining and gnashing of teeth could go on for as long as continued to not address them. The minute I got down on one knee and acknowledged their affliction - why, off they ran like a little skipping calf out to pasture! Just as if a real miracle had happened! I don't mean to make light of this in any form of disrespect, all I am saying is that to be acknowledged, to be understood, actually makes people well. I myself have had times where I have suffered from depression from being chronically ill and made my way out of it not by means of medication, but simply by talking to others with the same issues. So to hear that my words somehow find a home in your heart or in the hearts of others as if they were their own, well, that just pleases me beyond measure. Thank you, Anne.

It has been so very important to me to find support from others in similar situations and I feel so lucky to be in a time when social networking makes connection possible.
I recently thought about my friends and realised I could easily list 5-6 dear friends and a similar number of good friends... all made through FB, some I've met in person, others I only know through writing. These friends understand how life is for me, more than any of my 'healthy' friends, (many of whom have dropped by the wayside during this gruelling journey!)
Recently, I felt very sad about the many losses this illness has brought me and posted about this in a group. Within a couple of hours I had over 20 responses and felt so supported by others kind thoughts.
Toni's blog and your piece are a more public form of reminding us we are not alone. It does make a big difference to know that we are in this together. Each of us have our own battles, challenges and victories, but we also share the underlying experience of chronic illness.
Thanks again, Theresa!

And thank you for the suggestion in regards to getting tested for Lyme Disease. I have been tested three times at the U of MN and each time comes back negative. I know there are other tests that some feel are more reliable, but I am not sure where the University falls in that regard. Every time I get a new doctor that is one of the first questions they ask me. So you are not alone in your "diagnosing" of the symptoms, that's for sure!

Thank you. You have nailed the gnawing sense many of us have (rightly or wrongly) of needing to 'justify' our condition, and the relentless exhaustion of functioning well below our former levels, with no 'end' in sight. Acceptance, compassion and wisdom are the only possible gifts to be gained from all this, and used in some small way to benefit others.

Fiona, you are so welcome. And thank you. Ahhhh! It DOES gnaw at us!! What a perfect word. It relates that sense of relentlessness and underlying painfulness of it all, doesn't it? It's so good to be able to let go of that sometimes - and so much needed! I find myself, in times when I am not coping quite so well, feeling the need to say things like, "Before I got sick I could..." and "I used to be a...". When I do this, I know that I am not accepting where I am at nor am I in the present moment. It takes so much work sometimes! But well worth it. Because like you said, the gift gained is compassion. I believe that with all that I am. And with that, we have everything. Wishing you the best on this journey.

Thankyou for writing this, Theresa. I can relate to how draining life seems to be at times, and how much energy and time things like this can take. Nothing happens quickly in my world - including this short comment! Brain fog and silly mistakes are the source of so much frustration for me, and I miss the cognitive skills that I used to have. Coping with the physical limitations and isolation are hard, but the brain stuff feels like the greatest cost to me. THANKYOU for saying what I haven't been able to articulate.

Rae, you are so welcome. I completely relate to what you are saying about brain fog and missing the cognitive skills you once had. I find this is a difficult one to get others to understand. For me, this is the one comment that gets "refuted" most often by well meaning (and I mean that in the best possible way) friends and family. "Oh, I do that all the time" is probably what I hear most often. But it's not the same, I know. It can be quite frustrating and very, very frightening at times. I find that the grieving process on this comes and goes, sometimes in short little circles and others that seem to take forever. It's a hard one to accept. I find that I judge myself most harshly on this one. Thank you for taking the time to write your comment. I know there are so many others out there that can relate that may not have that opportunity. Tonight, you spoke for them. Thank you.

Thank you for this post. I was very much struck with "giving up". Unlike most of your readers, I think, I do not have a diagnosis after a year of trying. I can so relate to your illness but I do not have a name for it or any medications to help. I, too, fear the judgements of others but I don't understand why. I think it is because I know that my appearance looks good and no one else can understand what is going on inside of me. If they see me out and about, they (reasonably) think that I must be better or not so bad in the first place. Most of my outings are forced (by me trying to act normal). Sometimes, it doesn't go well but I can see by being around other people that I am definitely not well and not like everyone else, no matter how hard I try. God bless you and keep you.

Alice, I remember all too well what those days prior to diagnosis were like. It's crazy how quickly we forget. Reading your post made me stop and think back for a bit about how things have changed since then. One of the things I find most interesting is how quickly I have forgotten and how much I take for granted. Those were terrible days. In regards to dealing with people, much worse for me than are the days today. Feeling unvalidated is so very painful. I remember feeling like maybe I was going crazy, doubting what I was even feeling or going through. So please, let me say with the the utmost understanding and care - I am so sorry that you are going through this. The other thing I found equally as interesting about myself is that (and I think this is why it was easily forgotten) I soon replaced it with something else. For me, I started to compare my symptoms with those of others. Since autoimmune diseases vary even with in the same diagnosis, I began to doubt my diagnosis. Maybe I didn't have it. I don't have this or that antibody or symptom, maybe my doctors are wrong. And then I moved onto, maybe they will take my diagnosis away from me. So what I learned most about myself is that what needed to change was me. I needed to figure out a way to be okay with what I have at any given moment - regardless of what others think or feel. And some days I succeed wonderfully, more more days than not, it takes effort to remember, to do the work, and to find the peace. Oh, what a journey we are on! I truly wish you better - easier - days ahead. I know for me, just visiting with people like YOU makes all the difference in the world.

Thank you, Theresa, for your heartfelt response. I have been going through the uncertainty of no diagnosis for so long that I am beginning to doubt if I will ever have a name for this illness or any help with dealing with it. I just take life day by day and just try to keep on going.

Thank you so much I was diagnosed w fibromyalgia and chronic fatigue syndrome in 1998. So many roads I've been forced to walk that I would not have. I live in the shadow of judgment every moment too. Nobody really believes the pain of this illness is legitimate. Even the latest findings suggest 'over active nerves' which only serves to make it sound like I am a big woosy. It makes it impossible to get disability so I live a tortuous life of working which exacerbates my pain exponentially . I try to appear well and try to squeeze energy from somewhere within the wall of pain that feels approximately like losing all my skin and walking around w exposed muscles and nerves. Every sensory input is an assault. But I value making a happy life for my children. I value family. Your words helped more than anything I've read in a long long time. My happy face feels fake. It is. But it isn't. Somewhere under all the pain that threatens my happiness there is still all my dreams and hopes and the happy girl I always was. When my illness takes over and demands I give up and give in... People think I'm selfish or lying. I have to guard the energy I have and spend it on my top priorities. This appears selfish. I'm expected to be normal because I look normal. I fight to live life and participate in things I value and that makes me look normal at times. But it is a fight. An agonizingly painful fight. Perhaps there is a new life where I can give up and reduce my suffering. it seems the only way is to finally let go of pushing for what once was my normal life. Maybe giving up means creating a new normal that respects me enough to stop faking normal to the point that it harms me and makes my pain unbearable. New normal means acceptance of my pain limitations. Trusting me that I know what helps and what is an unfair amount of pain to expect me to endure in the name of being normal. Like you, I think I finally see how giving up isn't always bad. Thank you so much for your words!

My dearest friend in this journey, when I read your words all I could do was weep. For you, for me, for all those who move through this struggle every day, invisible and often times unfairly judged. I remember at one point when I was standing in front of the mirror trying to get ready in the morning and I was putting on make up to cover up my bad color and dark circles. I stood there and just looked at myself and all of a sudden I felt this deep connection to all the women/mothers in the world with chronic illness that do the very same thing. Day after day, putting on that face so that their family won't worry, so that things might appear "normal", so that there suffering doesn't affect those around them. People don't understand. This isn't an illness that has been going on for a week, or a month or even a year. We see the weariness on our loved ones faces and we fear terribly that what we are putting them through will one day just "be enough". We watch our friends drop off, one by one, as the walls of our homes get smaller and smaller. So we do our best to cover it up - to put the smile on, to not introduce it into the conversations we have with friends along the way, to push ourselves or to "squeeze energy from somewhere" so we keep connected with life. But the crazy thing is...that creates the very thing that torments us. Suffering alone. Feeling fake. Being judged. I too, continue to hold on to that little girl. That women that ran marathons, loved her career and spent every second outside. In fact, the psychiatrist at the pain clinic I go to just recently said, " You have to stop judging who you are today against who you were before you got sick." Simple words and one would think that after all these years it would come easy...but it doesn't. It takes time. For me and for most people, it takes years. And I don't think we ever truly "arrive" at being perfect with our illnesses. But we learn some really valuable stuff along the way, bit by bit, tiny piece by tiny piece. Until those tiny pieces add up in our minds and create an "Ah ha!" moment when we say, "Hey, maybe a new normal is possible. Maybe I can envision what letting go looks like. Maybe what it looks like feels better and maybe I'm not giving up yet ANOTHER thing in my life...maybe I am GAINING something." I think what we need to trust is that letting go opens us up to possibility. Scary possibility. Feels like I'm jumping off a CLIFF possibility. But possibility nonetheless. By putting on that face every day we just keep trying to control our situation. Forcing something that simply is not. Letting go means accepting what is - what is REALITY. What is our reality. Living anything different will only give us results that don't match our situation. If I keep telling you I love brussel sprouts and you keep giving them to me, who is to blame? Maybe if I just say, you know...I really don't like brussel sprouts, but thank you so much. What a relief when you bring me corn on the cob!! ;-) Our fear is that we will allow ourselves to be complainers, to be needy, to drag everyone down. And the fear under THAT is that we won't be loved. The truth is something much different. Our family, our friends - they want the authentic you, the authentic me. We will still remain the beautiful people that we are, only better. That beautiful person in you that fights this horrifically difficult fight every day will not disappear. That beautiful person that is YOU will only become more beautiful because she is living her reality and being honest about it.
I know it's not easy. And it sure as heck does not happen over night. We practice at it every day and little by little we begin to let go. Little by little we learn to live in each moment authentically, seeing NEW beauty and loving ourselves for who we are.
Thank you for posting so honestly. As I read your words I felt as though I could see your face and hear your voice. Maybe because it's my face and the face of so many others. It's hard to put yourself out there like you did. So thank you for taking the leap. I hope with all hope that this is one of those moments in your life, one of those tiny bits that lead to an "Ah ha" moment for you. A tiny piece that makes your life just a little easier.
I wish you the best of each moment,
Theresa

Thank you, Theresa, for writing such a touching, revealing and easily identifiable post for those of us who suffer from a chronic illness. My heart goes out to the patients who have not found the true diagnosis in the midst of their suffering. There are so many auto-immune illnesses out there, it could be one of hundreds and also an "over-lap" of several.
My own journey is that of systemic scleroderma, I was diagnosed 14 years ago after 3 years of "what the heck do I have" searches thru many a sub-specialty doctor only to find that my own ob-gyn suggested I try testing for scleroderma. Unbelieveable that I went in for a yearly exam and the suggested diagnosis comes from a man who delivered my babies (who were at that time in highschool)and I had met in my twenties! See you never know....
Prior to my diagnosis, my older sister had lost her battle with SLE years before today's patients are now living well with it. She was a true fighter, then she grew weary of the entire process of "by guess or by golly" meds and her kidneys failed her. When I look back at her pictures as a patient, I believe she possibly had an overlay of lupus/scleroderma. I wouldn't have known that back then because I was diagnosed only 10 years later myself.
Today, I am 2 years past my "suggested" prognosis and for that---I'm grateful. What I've learned so far in my journey is: you teach people how to treat you (incl your docs); knowledge is power so equip yourself with enough knowledge to help yourself but not intimidate your docs; there is a very thin line concerning communication with all our sub-specialty docs and yes, not only can you "fire" them, well, they can also "fire" you as a patient.
[Sidebar: although this has never happened to me, I've heard stories of this happening to other patients who crossed the line];
Ask for what you want but make sure you have "set it up" to where the parties involved "get you" and won't be offended by your request. It's business (about living well with your illness) and not personal. This spans your life with immediate and extended family, close friends/acquaintances, John Smith off the street.
Always "ask", you never know if you'll "get" if you don't ask. Do it politely, respectfully, authentically---don't be Eddie Haskell about it because people see right through that. Have your periodical "pity party", we are all entitled to having a bad day. But don't let it linger or you'll head down that rabbit hole called "depression". Service to others is a great antidote to life being "all about you". There are so many people out there suffering even worse ailments so take stock of what you do have in spite of your chronic illness and only if you feel led, help someone else. You'll be blessed in the process of being a blessing to someone else.
Last, don't ever give up, give in or let go until you are absolutely sure that you're ready to do so. There's always that light around the bend, that child that makes you smile, that sight or smell that says "it's okay today"....look for it.
Be blessed today and take it---one day at a time.

Excellent REPLY! I have now read your reply three times and have decided to just print it off for safe keeping. Really, truly good words of wisdom - coming from a place of knowing and compassion, indeed. Thank you Cindi, for taking the time and effort to compose such thoughtful response. I agree with many of your thoughts in regards to the doctor/patient relationship. I have tried, although not as eloquently, to give the same advice to others. You wrote of this "balance" very well and I hope you don't mind if I pass it along.
I am so sorry to hear of your struggle and the loss of your sister to SLE. I have not lost a sister, but I lost an Aunt at 53 and my mother has lupus as well. She began having strokes in her late 60's. Neither had an appropriate diagnosis until it was too late. I am so thankful that, although slow, things are changing for the better in that regard. I hope every day that my battle will be easier because of it. And you - two years past the "suggested prognosis"! There are no words. The depth of what that means, on so many levels, cannot be written. Just know that I hold you in my heart - in a place of compassion and understanding.
Thank you again, Cindi.
Theresa

I could have been the author of your story, except that I do not have the cognitive ability to write as well as you. I count my blessings daily but as you said, when everything hurts and everything must be planned around your illness, it is easy to put those blessings in the back of your mind. I was denied disability and have had to hire an attorney to appeal it. I am 56, worked since I was 14, been married 34 years, raised three wonderful children, and my illness interferes with every part of my life and to accept a denial from Prudential, who was paid monthly from my employer and knows I am undeniably ill, yet uses bad faith to deny me. They will force me to file for Social Security Disability...put it on the government. It makes me so angry. I pray I get the appeal or I do not know what will happen to our life. Please pray for me.

So much has happened since this article originally posted. Hartford did ultimately deny me. Almost as if a bad dream were to finally have come true. I had a doctor, a psychiatrist associated with the pain clinic I visit through the University of Minnesota, tell me on more than one occasion,"Don't worry. You are not going to be denied. And if you do, you have an entire team of doctors here that will support you." The sadly ironic thing is that he passed away very unexpectedly from cancer. At first, I wanted so desperately to tell him...SEE, it happened! I knew it would and it did! But you know what? That passed so quickly. As did my fear that life would come crashing down around us. I simply could not imagine what our family would go through if that income was lost. Just as I could not imagine the emotional trauma I would go through. In reality, what I found out was that we are just fine. In some respects we are better. It's a terrible injustice what my insurance company did to me (to my family). And I had multiple attorneys ready to fight for me. Some of them willing to go to great lengths to do so. But time did some interesting things. In my waiting for phone calls to be returned, for documents to be filed, for records to be sent... time passed. About two months. And during that time I learned some really valuable things about myself and my world. It did not crash down around me. In fact, I got stronger. My husband got stronger. Our understanding of how things impacts us grew. We experienced good days and bad days, just like we always had. And I actually came to realize how negatively living under the cloud of my long term disability insurance was affecting me. In the end, I chose not to fight them. For me, this decision has been a blessing.
I tell you this not to say doing one thing or another is the "right way". I simply tell you this to let you know that when you say, "I do not know what will happen to our life" I know that feeling. But I also know that we survive. Look at everything you have gone through to this point. And here you are. Our good comes and our good goes. The bad comes and the bad goes. The more we can remember this, the less impact these horrible things have on our life. It's taken me a long time and a lot of work to get to this point. And I still spiral down at times in the face of "more bad news". But I'm learning.
I wish peace, Mollie. Peace if you get the appeal and peace if you don't get the appeal. Thank you so much for sharing your story with me. I'm not glad that either of us is sick, but I am so very thankful to share my story with you.

I found your writings to be very helpful to me since I am at the beginning of a diagnosis of what exacting is going on with all this chronic pain,in the spine,muscle cramps in the legs, stabbing pain where ever it wants to happen at the time,cramping of muscles of any part of my body,have lost 20lbs since January of 2015 Being Canadian health care is not speedie for diaognosis' and my "illness" started about 10 years ago at about 48.I have two grown sons ages 37 and 34 with no grandchildren,I was married last August and a m 9 yrs older than my spouse and he has health problems of his own,so it always feels like a competition whose pain is worse,so I don't say much about it,we are both on disability......I feel so much alone with no family to talk to or to turn to so your article has been helpful as to just cope....thanks so much..